Charlotte Bevan, fierce advocate and activist, died at home January 13, 2014.
A mother of teenagers, wife of a farmer, parent advocate for parents of eating disorder patients, major contributor to the Around the Dinner Table forum, writer of short information films, Expert Carer for the Eating Disorders team at the Maudsley and Breast Cancer patient.

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Wednesday, 29 February 2012

I don’t know if you are aware of the major
changes to the DSM V for Eating Disorders and I am concerned that some
participants in the programme may be suffering from a brain disorder and
require expert medical attention. As most Eating Disorders are on the Anxiety
Disorders spectrum as well, I am not sure that the format of your show
necessarily takes this into account. I
would hate for you to look back at your show, once the new DSM V is published
and find that you have treated an undiagnosed Eating Disorder patient in the
wrong way.

The first category I would like to draw
your attention to is Avoidant/Restrictive Food Intake Disorder:

Avoidant/Restrictive Food Intake
Disorder

A.Eating or feeding
disturbance (including but not limited to apparent lack of interest in eating
or food; avoidance based on the sensory characteristics of food; or concern
about aversive consequences of eating) as manifested by persistent failure to
meet appropriate nutritional and/or energy needs associated with one
or more of the following:

B. There is no evidence that lack of available food or an associated
culturally sanctioned practice is sufficient to account alone for the disorder.

C. The eating disturbance does not occur exclusively during the course of
Anorexia Nervosa or Bulimia Nervosa, and there is no evidence of a disturbance
in the way of which one's body weight or shape is experienced.

D. If the eating disturbance occurs in the context of a medical condition
or another mental disorder, it is sufficiently severe to warrant
independent clinical attention

The new DSM V is also including Binge Eating
Disorder for the first time:

Binge Eating Disorder

A. Recurrent episodes of binge eating. An episode of binge eating is
characterized by both of the following:

1. eating, in a discrete period of time (for example, within any 2-hour
period), an amount of food that is definitely larger than most people would eat
in a similar period of time under similar circumstances

2. a sense of lack of control over eating during the episode (for example,
a feeling that one cannot stop eating or control what or how much one is
eating)

B. The binge-eating episodes are associated with three (or more) of the
following:

1. eating much more rapidly than normal

2. eating until feeling uncomfortably full

3. eating large amounts of food when not feeling physically hungry

4. eating alone because of feeling embarrassed by how much one is
eating

5. feeling disgusted with oneself, depressed, or very guilty afterwards

C. Marked distress regarding binge eating is present.

D. The binge eating occurs, on average, at least once a week for three
months.

E. The binge eating is not associated with the recurrent use of
inappropriate compensatory behavior (for example, purging) and does not occur
exclusively during the course Anorexia Nervosa, Bulimia Nervosa, or
Avoidant/Restrictive Food Intake Disorder.

I think that perhaps it would be wise for you to consider carefully whether
the participants in your programme may be suffering from an undiagnosed Eating
Disorder. There are many specialised
Eating Disorder professionals who would be able to help you and, if you would like
to discuss this further, or you would like me to put you in contact with some
Professors of Eating Disorders, I would be delighted to help.

Tuesday, 28 February 2012

I got to meet Professor Lask on Sunday. It was rather surreal and he was utterly charming. I managed not to dribble, fall over my own feet, burble inanely or pull stupid faces in an effort to get attention. (Phew!). I am always nervous about meeting someone whose work I admire. However, when they are a psychiatrist, it puts a certain onus on me to appear vaguely sane, vaguely grown up and vaguely intelligent. I think I managed the vague thing beautifully.........................

This is the only time those Welsh boys will ever look small. A million thanks to AS for giving HWISO, the girls and a very excited young man an overwhelming experience and a joyous day. Being Bevans, they were able to claim Welsh heritage at the final whistle, once the whole try debacle had been sorted out......

Prof Gately says: “While we need to be careful how we say it, at the same time children should know life isn’t simple and obesity is an issue they have to address.

“If there is a supportive home environment, the evidence is that eating disorders will not follow. Eating disorders, like anorexia, largely develop in the homes of white middle-class girls with controlling mothers, and the child reclaims control with how she eats. That shouldn’t happen if a child feels cared for and is taught to take ownership of their diet.”

Now this may come as a real surprise from a Professor of Exercise and Obesity. However, when you google him, you come up with this. He appears to own a company, a private company, that provides "Fat Camp" services to the NHS. In 2008, he was charging £4,000 per person for the six week experience, funded entirely by local PCTs.

So eating disorders are, in fact, a problem for him - they provide him with no income stream.

Thank you for the wonderful E for working long and hard at rewriting the Eating Disorders section of the Blackdogtribe website. Thank you to Ruby and her team for letting her to it. This is good evidence based information for people who need it.

Would it surprise you to know that Venus Williams is 3kg off being classed as overweight? Does this now make you rethink the current obesity epidemic hysteria in the media?

For the three zillionth time, BMI was never ever ever meant as a diagnostic tool. If you have a clinician who is calculating your or your child's mental and physical health based on BMI, stick your fingers in your ears and hum loudly.

The body mass index (BMI), or Quetelet index, is a heuristic proxy for human body fat based on an individual's weight and height. BMI does not actually measure the percentage of body fat.

BMI was explicitly cited by Keys as being appropriate for population studies, and inappropriate for individual diagnosis.

BMI has been used by the WHO as the standard for recording obesity statistics since the early 1980s. In the United States, BMI is also used as a measure of underweight, owing to advocacy on behalf of those suffering with eating disorders, such as anorexia nervosa and bulimia nervosa.[citation needed]

BMI can be calculated quickly and without expensive equipment. However, BMI categories do not take into account many factors such as frame size and muscularity.[15] The categories also fail to account for varying proportions of fat, bone, cartilage, water weight, and more.

Despite this, BMI categories are regularly regarded as a satisfactory tool for measuring whether sedentary individuals are "underweight", "overweight" or "obese" with various exemptions, such as: athletes, children, the elderly, and the infirm.

One basic problem, especially in athletes, is that muscle weight contributes to BMI. Some professional athletes would be "overweight" or "obese" according to their BMI, despite them carrying little fat, unless the number at which they are considered "overweight" or "obese" is adjusted upward in some modified version of the calculation. In children and the elderly, differences in bone density and, thus, in the proportion of bone to total weight can mean the number at which these people are considered underweight should be adjusted downward.

The medical establishment has generally acknowledged some major shortcomings of BMI.[18] Because the BMI formula depends only upon weight and height, its assumptions about the distribution between lean mass and adipose tissue are not always exact. BMI sometimes overestimates adiposity on those with more lean body mass (e.g., athletes) while greatly under-estimating excess adiposity on those with less lean body mass. A study in June, 2008 by Romero-Corral et al. examined 13,601 subjects from the United States' Third National Health and Nutrition Examination Survey (NHANES III) and found that BMI-defined obesity was present in 21% of men and 31% of women. Using body fat percentages (BF%), however, BF%-defined obesity was found in 50% of men and 62% of women. While BMI-defined obesity showed high specificity (95% of men and 99% of women presenting BMI-defined obesity also presented BF%-defined obesity), BMI showed poor sensitivity (BMI only identified 36% of the men and 49% of the women who presented BF%-defined obesity).

Sunday, 19 February 2012

Mum is coming for lunch today. We haven't seen her since Christmas, due to her overfull social diary, the terrible weather and her bout of pneumonia, that she only 'fessed up to last weekend.

The plan is to keep her downstairs at all costs. I have uncovered the secret drawer where all the "brown" jumpers are and found the secret nook where the jeans are hidden. However, due to half term and hours spent chasing down Highways Agency on the internet, the organisation is not quite what it was in early December.

The sun has finally come out and I am hoping this will ease my black dog a little. I have been inspired by the Fairy Blogmother and have pinched this from her blog - thank you, Katie.

“While wandering a deserted beach at dawn, stagnant in my work, I saw a man in the distance bending and throwing as he walked the endless stretch toward me. As he came near, I could see that he was throwing starfish, abandoned on the sand by the tide, back into the sea. When he was close enough I asked him why he was working so hard at this strange task. He said that the sun would dry the starfish and they would die. I said to him that I thought he was foolish. there were thousands of starfish on miles and miles of beach. One man alone could never make a difference. He smiled as he picked up the next starfish. Hurling it far into the sea he said, "It makes a difference for this one." I abandoned my writing and spent the morning throwing starfish.”―Loren Eiseley

Friday, 17 February 2012

So I have now been given further clarification on our crop loss issue from the civil servant, employed by the other civil servant (who is reportedly being "a little obstructive"), who, in the grand scheme of things, is employed by us, the Great British Public.

It now appears that the crop loss is not being considered for payment because it is a drainage issue. Huh? Of course, it's a drainage issue. As we have been telling you, we lost our crop because the Civil Engineers (that's a misnomer if ever there was one - civility was not their strong point during the build) obliterated the drainage system and then didn't do any remedial work. With me so far?

Apparently we are being over optimistic by claiming twice for a drainage issue. We are claiming for a new land drainage system across the field that was cut in half by the new road. Why are we claiming for crop loss as well? Er.... let me think......because we are farmers and what we produce is crops and we haven't been able to produce a crop on that particular piece of land for three years because of the work carried out by the Highways Agency.......Is it SO hard to understand?

Let me put it another way. The Government Agency comes into your office, commandeers a part of it and then cuts off your electricity, so your computers don't work. There is nothing you can do about the loss of office space - it has been Compulsory Purchased. However, imagine your loss of business if they refused to reconnect the electricity supply?

Perhaps I shall email this to the parties concerned. Being desk bound civil servants, perhaps this is something they would understand............

Thursday, 16 February 2012

The first was sitting in a meeting about the A14 Haughley Bends, a project that went straight through the middle of the farm, for the second time in 35 years. Nearly 4 years on and we are still trying to come to some agreement about the most basic of losses incurred on the farm - crop loss. It is a pity that we are dealing with a civil servant who doesn't understand how hard it is to get a sugar beet harvester stuck, during on the of the driest winters on record.

Now sugar beet harvesters are not like their more delicate and sensitive cousins, the combine harvester. The combine harvester's job is to harvest cereal crops in the balmy summer and early autumn months, across (usually) dry fields gentling rolling in the wheat for your daily bread. The beet harvester works through the winter months grubbing up root vegetables to turn into sugar and is therefore a more rugged and hardy breed. It is quite difficult to get one stuck. It is really difficult to get a field that is impossible to harvest, because the beet harvester cannot even get up a quarter of the first row.

Now why did the harvester get stuck? It got stuck because the field's land drainage system was cut in half by the new road, with no remedial work done. So the field has no drainage. Here in East Anglia, being predominantly clay, we need proper land drainage systems because "In moist climates, soils may be adequate for cropping with the exception that they become waterlogged for brief periods each year, from snow melt or from heavy rains. Soils that are predominantly clay will pass water very slowly downward, meanwhile plant roots suffocate because the excessive water around the roots eliminates air movement through the soil."

Because we are unable to agree that there has been any drainage issues, due to the government authority involved being unable to produce a drainage expert (Huh? I would suggest Googling Land Drainage East Anglia, personally, but then I am not a civil servant), we are unable to claim for the crop loss arising from the poor drainage, because paying the crop loss would set a precedent that there might be a drainage issue.

The second was hearing about a well-meaning but totally fixated on "body image/dissatisfaction being the only cause of anorexia" therapist so traumatising a patient that the patient did not seek help for her eating disorder for another 8 years. It makes me cry that the inflexibility of the therapist and her inability to see beyond her particular "pet" theory has meant irreparable physical harm and prolonged mental distress. More gestalt could have prevented this. Time for eating disorder clinicians to look beyond their office walls and take in a wider view.

I have been sent a wish list. A list that many of us advocates would like to see published and endorsed by an organisation such as the IoP, the RCP or the AED. A list that we could take to treatment providers, when faced with situations such as this and this.

Now I am not advocating that we return to the bad old days of force feeding. The idea of vulnerable women being force fed is a horror deeply embedded in the British psyche and it is not one that we, as a nation, would want to return to. In my mind, it is somehow tied in with this horror. Today, ensuring a patient receives adequate nutrition, in a clinical setting (or Holloway!) is a much kinder, gentler procedure than the funnels and strapping of old.

All this talk of force feeding and NG tubes makes it appear that I am advocating all anorexia nervosa patients should be treated against their will and always have an tube inserted in a hospital setting. Well, in a way I am. Not the tube and clinical setting, unless the patient is unable to eat orally. Why unable to eat? Why not "won't" eat?

"Won't eat" implies some kind of choice. If we believe that a patient "won't" eat, it naturally follows that anorexia nervosa is some kind of choice: that a patient is "choosing" not to eat; that this is a weird mind over matter condition, a responsibility assumption.

If we assume that the patient can't eat, is unable to eat, because anorexia nervosa is a brain disorder (sorry ELT and Katie), a brain arrhythmia, a misfiring of the biological processes, a blip in neurotransmitters, the reasoning for "force feeding" becomes a little more clear. If you throw into the mix the understanding that the majority of anorexia nervosa patients are unable to understand or see how ill they are (anosognosia), perhaps you will begin to see that feeding an anorexia patient, even against their supposed "free will", is not a cruel imposition of society's god complex, but a medical necessity.

For most patients, refeeding via an NG tube in hospital is not the advocated treatment. The NICE guidelines recommend that refeeding is done at home, as this seems to have the best outcomes. The method with the best outcomes of all appears to be this one, Family Based Treatment (the Maudsley Method as manualised by Lock and Le Grange). As a parent/carer, once you understand that the patient is unable to eat, you quickly begin to realise that getting angry and trying to impose your will on that of the patient is a hiding to nothing. The realisation that the patient can't eat means that gentle encouragement and firm insistence, with a lot of love and confidence, is the best way forward. This is not "force feeding". This is a medical protocol.

So, you may then ask, what is the point of refeeding an anorexic patient, if they do not want to eat? If they want to die, why not let them, as some clinicians do (and are happy to write papers for other eating disorder clinicians explaining the logic of all this). The answer to that question is that many psychological symptoms are alleviated on weight restoration. Not all of them and sometimes there are co-morbid conditions to be taken into account but, in general, this statement is true. Once a patient returns to optimum function (a physical state at a level that the brain can begin neuroplasticity and heal the damaged pathways), many of most severe psychological symptoms begin to disappear. Conditions such as anxiety, depression, OCD may still be present but the patient is physically fit enough to be able to cope with them and respond to therapies without returning to restricting food.

You may have noticed I have been hyper-linking all over this blog. So why am I not hyperlinking the link between optimum function and the alleviation of psychological symptoms? I am unable to find any studies on this. It appears that for eating disorders, nobody has bothered to write a paper on the importance of full nutrition for psychological symptoms. Why?

So I return to the list (Thank you, MS).

- Patients do not choose to be ill

- There is no recovery without weight gain

- Being able to create the conditions for getting a patient to eat is the most difficult aspect of the illness to treat and needs a number of adults working together closely and effectively to make this happen

- Normal conventions of respect for patient autonomy and choice cannot be used when treating the very sick because they are too ill to make rational decisions affecting their care and wellbeing

- Comorbid condtions can be considered and treated at a later stage in the refeeding process but formal diagnosis in the early stages should be avoided as the brain is too malnourished for the patient to present as his/her 'true' personality

- Establishing a 'root cause' is unnecessary and irrelevant because once the illness and inability to eat has taken a hold then it has to be treated by full nutrition and weight gain.

I was having a purple patch yesterday. I was trying to explain how to remain calm in the face of extreme anxiety, when refeeding an eating disordered patient. However, I think this advice could apply to all parents of teenagers, when faced with the maelstrom of a teenage meltdown.

Two things to bear in mind with the reaction to the ed anxiety. Firstly the Maudsley team have done some interesting experiments on the way ed patients perceive people's facial expressions. They have a much clearer view of anger, sadness, depression etc and are almost unable to see happy, smiling faces. This explains why a neutral and non-aggressive stance is more likely to get the best response - it is sort of like patients perceive smiling as snarling, ergo find smiling as aggressive as anger.

The second aspect is more difficult and that is modelling effective behaviour. It is something I learnt about on one of the Janet/Gill training days at the Maudsley. This is what, I suspect, Mamabear is getting at. No one is perfect. With the perfectionist tendencies of an ed patient, it is very difficult for them to accept anything other than perfection for themselves - they think they should be happy ALL THE TIME. We all know that is impossible - life happens! However, the slightly skewed perspective of ed means that if they can't be happy all the time, why bother to be happy at all? They cannot be perfect at being happy, so why go there?

Modelling effective parenting shows that it is all right to have the occasional meltdown, to cry, to laugh at inappropriate times etc. However, I would be cautious about doing too much modelling of inappropriate behaviour - stability and consistency seems, to me, to be the key to nurturing the emotional recovery of the patient - we all tend to muddle along without massive highs and lows every day. A sort of bland tootling along the path of life, encountering occasional hills and valleys, rather than scaling the Grand Canyon every day.

Tuesday, 7 February 2012

Food Issues - Pre-Teen Anorexia

Can a child as young as eight really suffer from anorexia nervosa? Recent headlines claim that pre-teen eating problems are on the increase, and some professionals are blaming schools for placing too much emphasis on healthy eating and being a healthy weight. Whatever the causes – and they are undoubtedly complex – delay in diagnosis and treatment in anorexia is a real concern. So what is the difference between a picky eater and a child or teenager who is exhibiting the signs and symptoms of a serious eating disorder? Jane is joined by consultant child and adolescent psychiatrist Dr Dasha Nicholls from Great Ormond Street, and by Dr Adrienne Key, consultant psychiatrist and lead clinician to the eating disorders unit at the Priory Hospital, Roehampton.

So I pick up the girls from the school bus yesterday and, on the drive home, I proudly announced that I had blogged for both of them. Emily has already seen the video and agrees that it is the coolest ever. I then told Georgie that I had just heard that Lana Del Ray's album had gone straight in at No 1 in the album charts.

Suddenly, a rational conversation descended into a weird Twilight zone discussion about who was more Indie with their musical tastes. There was no aggression, no sniping, no anger. This whole conversation took place amidst gales of laughter and good natured joshing

"I was listening to Lana long before she became famous".
"You are so mainstream. Your favourite artiste has a No 1 Album. You are SO Top 40."
"You think you are so indie but I bet you can't spell it"
"I can .....I N capital D I E"
"Capital d? Capital d? You are so sad"

I admit to giving up on this paper. It the last gasp of a dying breed. Strober is retiring as editor (thank goodness) and this last defence of a dying paradigm is badly written, badly argued and nothing but a personal attack on the Fairy Blogmother. The hard copy is condemned to the bonfire and the computer copy to the recycle bin.

I really tried to wade through the sickly treacle of self-aggrandisement and pompous self-justification. I saw a few tiny nuggets of wisdom. Sadly, they were so heavily camouflaged by what came across as macabre "delight" in describing both the agony and the suffering of the patients and their families, the nuggets were almost indistinguishable from the detritus of outdated and harmful, non-evidenced based, nonsense that has pervaded the eating disorders world for far too long.

I am not sure what annoyed me more: the very un-English way of exaggerating his own importance, which grates so terribly outside of UCLA, or the fact that he gave himself 19,000 words in an International journal to try and squash the cicada calls of the parent advocacy movement. He failed. Attacks like this are all too common. They have failed before and will fail again.

It sounded to me like the weak roar of a dying lion, whose teeth are so rotten, he is no longer able to feed.